Involving people living with dementia in everything we do

Joy Watson, a Society Ambassador living with young-onset Alzheimer’s, interviewed Kate Lee shortly before the Dementia Hero Awards in Birmingham.

Joy: I’d like to start by saying, I’m interested to know if you’ve been interviewed by someone living with dementia before?

Kate: I have Joy and, strangely, it was you! In Manchester, a little short while ago, when we were very lucky to meet with Andy Burnham, the metro mayor. Not often enough, I should say – it’s something I would love to do more of.

Joy: It’s my understanding that there are plans to help people affected by dementia to get more involved with different aspects of the Society. How do you see your role in bringing this about?

Kate: We talk a lot about ensuring that we hear the voices of people with dementia across the organisation, but I was really keen to push further than that and really encourage us to not only consult with people with dementia, but really involve them in everything we do.

So, having people on project teams and part of the design of our services. And running some of our services – we’ve got three incredible gentlemen in Essex, all three with dementia, who are running a service.

Joy: That sounds really encouraging for someone like myself who’s living with dementia. To hear that makes me quite excited actually.

Kate: I just think there’s a lot further the organisation could go in pushing ourselves. I’d love to see us employing more people with dementia onto our staff teams. It’s a really exciting time to bring, ultimately, the people that the organisation is here for into the fold.

I think I’m driving everybody mad at the moment, because every time anybody asks me anything or shows me anything, my first response is – have people with dementia been involved in how this has been set up? What did they say when you designed it? How are they being involved on the day?

Joy: How do you intend to help people affected by dementia to be a part of this venture? I think we’ve homed in on co-design and co-production?

Kate: They can sound a bit jargony, but for me, co-design is where we’re looking at the things we’re doing – at our new services or what we campaign on or what does our brand look like – right from the start.

Sitting down as equal partners with people with dementia and saying, ‘What works?’, ‘What do you think?’, ‘We’re trying to achieve this – is there a better way of doing it?’

Co-production is a way of us setting the organisation up so that you really can’t do something without involving people with dementia.

A really simple example would be building into our protocols of how we recruit a new member of staff that someone with dementia has to be involved.

Or, when we review how well something has gone, having it built into that process that people with dementia will audit those and be supported to review those, or even write them for us.

Joy: Quite often out there, people get sidestepped and don’t feel useful and valued. But I think what the Society is promoting is that we can feel that, after a diagnosis, it’s not the end of the road. Yourself and the teams involving us means so much.

Kate: I think that’s true and, if you think about all our brilliant fundraisers and supporters, they’re not giving money to Alzheimer’s Society. They’re giving money to people with dementia or for researchers to find a cause.

So, unless we can demonstrate to them that people with dementia are really involved in the organisation, we’re not being transparent, we’re not being honest about the way the organisation works.

We want to show we’re having an amazing impact, we are making a difference.

I could say that a million times over – it’s not as powerful as you saying it, Joy, and that’s what matters.

Joy: Correct me if I’m wrong, but I believe we now have a person living with dementia on the Board of Trustees. Are there any plans to extend this – on the board or in other parts of the organisation?

Kate: We have, we’ve got Chris Maddocks, who was recruited as a trustee last September. Chris has been living with her diagnosis for some while now and has both vascular and Lewy body dementia.

I’d certainly like to put at least one more person with dementia on the board. It’s a big responsibility and it’s a lot for Chris to be the only voice of someone with dementia on the board. I would like us to have at least two people on that. 

But we’re also involving people in our committees – we’ve got people on our finance committee, audit committee – and on lots of our major projects. We’re putting in a new finance system at the moment and we’ve got Pete Middleton advising on that.

That’s been hugely helpful because if people with dementia aren’t helping us put that finance system in, they’re not pushing us to think about simplicity.

Joy: Yeah, and I think that benefits the Society and it benefits us as well, because we can use the skills that we’ve learned.

Kate: It is incredible, you’ve all had big busy lives before your diagnosis and we need those skills. We need you!

Joy: I’m sure you would agree, we all need to be needed, whether you’re the CEO of a large organisation, or someone helping out at their local dementia café.

For me, it’s all about belonging and feeling valued.

Month of celebration

July 2023 will be a monthlong celebration of how Alzheimer’s Society is involving more people with lived experience of dementia in even more ways.

We’re co-producing more in everything we do, bringing people with lived and learnt experience together in equal partnerships.

Keep an eye out for more opportunities to get involved!